SELF-CARE AND QUALITY OF LIFE IN PEOPLE WITH PARKINSON’S DISEASE AND THEIR CAREGIVERS

Abstract Objective To examine associations of self-care and the quality of life (QOL) in patients with Parkinson's disease (PD) and their caregivers dyads. Background Patients with PD engage in self-care with motor and non-motor symptom experiences. There is insufficient knowledge about associations of self-care and QOL in patients with PD and their caregivers though PD patients and family caregivers are interdependent. Method: A total of 73 PD patients and primary family caregivers from the Korean Parkinson's Disease Association or who visited outpatient clinics of the tertiary hospitals in Korea participated in this study. Dyad members completed the survey of the self-care (the Self-Care of Chronic Illness Inventory and Caregiver Contribution to Self-Care of Chronic Illness Inventory) and QOL (Parkinson’s Disease Quality of Life Questionnaire and The Parkinson’s Disease Questionnaire-Care). The comparisons of self-care and quality of life within two dyad members were conducted via paired t-test and Pearson's correlation using SPSS 26.0 Result: PD patients reported significantly higher levels of self-care maintenance (78.34 vs. 70.21, patients vs. caregiver respectively, p<.001) and management (65.9 vs. 60.49, p=.029) than caregivers. Patients’ self-efficacy was significantly correlated with their QOL (r=.270, p=.021). Caregiver contribution to self-care management was significantly correlated with their own QOL (r=.365, p=.001) and patients’ QOL (r=.234, p=.047). Conclusion The self-care efficacy of patients and the contribution of caregivers to self-care management can affect the QOL of both patients and caregivers. A dyadic approach for the intervention of self-care management is crucial to improve the QOL of patients with PD and caregivers.

multi-pronged project designed to promote cognitive health, reduce the risk of dementia, and help develop a dementiafocused strategic plan for Los Angeles County (LAC) that prioritizes the needs of those impacted by dementia and cognitive impairment and their caregivers. To support this effort, the HBLA team analyzed weighted data from the 2019 and 2020 California Health Interview Survey (CHIS) to better understand the profile of adult caregivers of individuals with dementia and cognitive impairment. CHIS is a publicly available, population-based, web and telephone survey that asks California residents about a wide range of health topics, yielding representative data on all 58 counties in the state. In 2019-2020, an estimated 1.6 million adults provided care to individuals aged 18 years or older in LAC. About 322,880 of those caregivers provided care for individuals with dementia and cognitive impairment, representing 2% of LAC's adult population. Many of these caregivers were female (59%), Latino/Hispanic (44%), and between 50-64 years of age (32%). Most of them experienced challenges, such as financial stress (61%), physical/mental health problems (18%), or a change in job status (27%), due to caregiving. These data provide the first local estimate of dementia and cognitive impairment caregiving in nearly 15 years. Results offer critical information about this population that will be used by the HBLA team and its partners to guide efforts to effectively meet the needs of caregivers in LAC. Lauren Fisher, Lauren Massimo, and Karen Hirschman, University of Pennsylvania, Philadelphia, Pennsylvania, United States Frontotemporal dementia (FTD) is a common cause of young-onset neurodegenerative disease that causes progressive changes in behavior and personality. FTD is often diagnosed around age 60, creating complex care needs that result in caregivers of persons with FTD experiencing high rates of depression, burden, and poor self-care. The iCare4Me for FTD study (NCT04686266) randomized 15 caregivers to receive a virtual health coaching intervention over 6 months (10 sessions) and 15 caregivers to the control group. To better understand the caregivers' experience with the health coach intervention, two focus groups with intervention group caregivers (n=5) were held. Focus groups were recorded, transcribed and coded using content analysis. Caregivers reported the most valuable aspect was the relationship that was developed with their health coach. Caregivers particularly valued having someone to talk to who was outside their immediate social and support networks. It was noted the structured selfcare curriculum served as a good backbone for discussions, but more specific coping conversations related to loss of patient empathy, prognostic uncertainty, and anticipatory grief are needed. One caregiver described being, "… awash in grief and it's affected my memory" while another described "grief is a big issue and I don't really find too many people understand it, because my husband is alive, but so many parts of him are gone". These findings will be used to inform future studies utilizing health coaches for caregivers of persons with FTD. Implications for evidence-based virtual health coaching interventions with caregivers of persons living with FTD will be described.

QUALITY OF LIFE AND SOCIAL DETERMINANTS PREDICT HOSPICE IN DEMENTIA CAREGIVING DYADS: A MACHINE LEARNING APPROACH Suzanne Sullivan, Wei Bo, Chin-Shang Li, Wenyao Xu, and Yu-Ping Chang, University at Buffalo, Buffalo, New York, United States
Hospice care is available to assist people with serious illness and their caregivers who wish to age in place, avoid unnecessary hospitalizations, and remain at home through the end-of-life. However, hospice care is under-utilized nationally despite the disproportionate prevalence of endof-life dementia caregiving burdens among disadvantaged groups. The reasons are unclear, but emerging research suggests that systemic barriers may contribute to underutilization. Commonly used quality-of-life frameworks have long included social determinant of health (SDH) factors such as social, environmental, financial, and healthcare access needs. Investigating the link between quality-of-life and SDH concerns of persons with dementia (PWD) and their caregivers may help identify when a PWD might benefit from hospice care. This study uses machine learning techniques to longitudinally analyze caregiver/care-recipient dyads in the National Health and Aging and Trends Study (NHATS) linked to the National Study of Caregiving (NSOC) (2015-2018) to identify quality-of-life and SDH predictors of hospice use among 117 PWD and their primary caregivers. Results indicate that distinguishing features selected by Information Gain Ratio [IGR] predict that memory rating, receiving food stamps, whether health prevents enjoying life, having trouble chewing or swallowing, diabetes, a regular doctor, and nobody to talk to can predict hospice use well (accuracy=0.6848; sen-sitivity=0.8244; specificity=0.5371; AUC=0.7425). Qualityof-life/SDH factors are important longitudinal predictors of hospice that can be detected up to three years prior to death. Our study uses inductive, machine learning approaches to provide testable hypotheses for future research to improve the quality of end-of-life care through hospice for PWD and their caregivers. Objective: To examine associations of self-care and the quality of life (QOL) in patients with Parkinson's disease (PD) and their caregivers dyads.

SELF-CARE AND QUALITY OF LIFE IN PEOPLE WITH PARKINSON'S DISEASE AND THEIR CAREGIVERS
Background: Patients with PD engage in self-care with motor and non-motor symptom experiences. There is insufficient knowledge about associations of self-care and QOL in patients with PD and their caregivers though PD patients and family caregivers are interdependent. Method: A total of 73 PD patients and primary family caregivers from the Korean Parkinson's Disease Association or who visited outpatient clinics of the tertiary hospitals in Korea participated in this study. Dyad members completed the survey of the self-care (the Self-Care of Chronic Illness Inventory and Caregiver Contribution to Self-Care of Chronic Illness Inventory) and QOL (Parkinson's Disease Quality of Life Questionnaire and The Parkinson's Disease Questionnaire-Care). The comparisons of self-care and quality of life within two dyad members were conducted via paired t-test and Pearson's correlation using SPSS 26.0 Result: PD patients reported significantly higher levels of self-care maintenance (78.34 vs. 70.21, patients vs. caregiver respectively, p<.001) and management (65.9 vs. 60.49, p=.029) than caregivers. Patients' self-efficacy was significantly correlated with their QOL (r=.270, p=.021). Caregiver contribution to self-care management was significantly correlated with their own QOL (r=.365, p=.001) and patients' QOL (r=.234, p=.047).
Conclusion: The self-care efficacy of patients and the contribution of caregivers to self-care management can affect the QOL of both patients and caregivers. A dyadic approach for the intervention of self-care management is crucial to improve the QOL of patients with PD and caregivers. Background: American Indian/Alaska Native (AI/AN) grandparents have always had an important role in their grandchildren's lives. Grandparents being the primary caregiver of their grandchildren has become a more pronounced occurrence in AI/AN populations in recent years and warrants review.

UNDERSTANDING THE CHARACTERISTICS AND WELL-BEING OF AMERICAN INDIAN AND ALASKA NATIVE GRANDPARENT CAREGIVERS
Methods: Data come from the National Resource Center on Native American Aging's 2017-2020 needs assessment of AI/AN adults ages 55+. Analysis explored demographic and well-being indicators by caregiving status (N=19,855): not a caregiver of a grandchild (non-CG; 71%); part-time caregiver (PT-CG; 18%); and primary caregiver (PR-CG; 11%).
Results: Caregivers were more likely to be younger, be married, have higher education and incomes, and live with family in a single-family residence than non-CG. PR-CG were more likely to be female, employed full-time, and live with family on reservation/trust land than PT-CG and non-CG. Regarding indicators of well-being, caregivers were more likely to participate in cultural practices than non-CG. PT-CG were more likely to socialize and have recently participated in vigorous exercise, were less likely to have fair/ poor health, and had fewer daily self-care restrictions than PR-CG and non-CG. PR-CG were more likely to be obese and daily smokers and had a higher measure of mental health concern, but were less likely to have recently binge drank or mainly eat alone than PT-CG and non-CG.
Conclusions: The demographics reviewed were all significantly different. PT-CG had better outcomes, pointing to a potential protective benefit, while PR-CG had more mental health strain. Further research is needed to better understand the interconnectedness of the indicators analyzed.

CAREGIVER SINGING VERSUS MUSIC ACTIVITIES IN DEMENTIA CARE: DIFFERENT BENEFITS IN DIFFERENT OCCASIONS
Lena Hammar 1 , Annica Lövenmark 1 , and Anna Swall 2 , 1. Mälardalen University, Västerås, Vastmanlands Lan, Sweden,2. Dalarna University,Falun,Dalarnas Lan,Sweden Music has been used in the care of persons with dementia (PWDs) in decades, and research show that music activities such as background music, music listening, sing-along activities and playing instruments have positive effects on mood, emotions and interaction. However, Caregiver Singing (CS)when caregivers are singing for or together with PWDs during care activities, are commonly in literature mixed up with other music activities. CS is a care intervention aiming to facilitate care situations and has shown to be useful to increase interaction and cooperation in care activities. This study aimed to describe caregivers' experiences of the differences between using CS compared to music in the care of persons with dementia.Data was three focus group interviews with 12 professional caregivers and residential facilities for PWDs. Data was analyzed with qualitative content analysis. Results revealed that CS are a successful tool to communicate, cooperate and bring out the PWDs hidden resources during care activities. The PWDs were told to be more adequate even thou the caregivers sings instead of speaking. Music activities were described to increase moods and socialization and are important part to increase a nice atmosphere. However, it does not increase cooperation in the way CS does. As interventions to facilitate caring situations with PWDs are needed, and CS has shown to be effective and should therefore be seen as an intervention not mixed up with traditional music activities. It is an important contribution in the education for staff in dementia care to include training in CS. Formal caregivers are the direct care workforce that aid residents in nursing homes. Providing care to residents is hazardous and physically demanding. Formal caregiver burden encompasses five attributes -perceived stress, caring for another, dependency of the older adult, responsibility, and competence. Exploring the five attributes of formal caregiver burden using a mixed-methods approach will determine if the attributes are present and how the nursing home setting contributes to formal caregiver burden. The purpose of this feasibility study is to describe formal caregiver burden of nursing assistants who provide direct care to residents in a nursing home setting in the Midwest United States. Study site one was only able to enroll three participants; therefore, results were limited. However, study site two was able to recruit and enroll the desired sample size (N=9). Interviews and self-report measures (Background/COVID-19 Questionnaire, Perceived Stress Scale, Caring Behaviors Inventory, and Nursing Home Staff Competency Assessment) were completed, and the PI compared integrated mixed methods results. Results suggest all the attributes of formal caregiver burden were present, and no additional attributes were identified. The feasibility of virtual recruitment, enrollment, and data collection procedures were confirmed. Multiple challenges played a role in the unsuccessful recruitment of this